This blog is about my life dealing with multiple digestive problems and feeding tubes. But it is also about my life in general, being married to M, working as a psychologist, having fun, being happy, and living life to its fullest no matter what.

Pages

Monday, February 28, 2011

My family physician has just been by - my lungs are clear, I seem to have the "real flu" combined with a beginning sinusitis.

The positive in all of this is that for the past 20 years my body never was strong enough to produce a fever - I have only had a fever twice all this time, usually remaining hypothermic. My family physician thinks it's a really good sign that my immune system and body are finally strong enough (and really getting nutrition) to produce a high fever. So no matter how awful I feel, I am actually happy that I am so healthy (kind of sounds funny with me actually being so sick right now).

She wanted to give me dihydrocodeine for my severe cough, but when I reminded her about its side effects on peristalsis, she decided it was better I stay away.

I am supposed to not treat the fever, but am allowed to take one dose of a strong antipyretic and analgesic at night before going to sleep. M is to get himself a flu mask for protection (he works from home), and I am supposed to stay in our bedroom as opposed to changing to the living room in the morning.

M made me change from the living room to our bedroom at 7 PM to try to get some sleep. However, I was hurting so much from the high fever that I tossed and turn for hours without being able to sleep. I know you are not supposed to lower your temperature, as it is your body's way of fighting off the viruses and bacteria. By 9 PM I could not take it any longer. I took the strongest analgetic and antipyretic I had at home - luckily it comes as liquid, as I absorb liquids better.

It really brought my fever and the achyness down, and I was finally able to fall asleep. Aaliyah, my youngest cat, slept almost the entire night right beside my head on my pillow case, purring occasionally...

I got up fever-free, feeling relatively well compared to yesterday, when the coughing started. Yesterday, all I had was a dry non-productive cough, today everytime I start coughing I start choking up... I decided that maybe I should see my family physician after all, at first thinking I would take the subway, as M can't drive me. A few coughing fits later I decided that there is no way I can't walk in the cold and take the subway.

I have a really hard time though asking my familiy physician for a home visit. Am I sick enough to justify her coming out to my apartment? Of course in the back of my head I have this nagging voice telling me that I am not sick enough, but I shut out that voice, decided to call her and leave a message with her assistant and let her decide if she needs to see me - now I have been waiting for a call back for almost 4 hours. It doesn't really help that today is her first day back after a week's vacation. In the meanwhile my temperature is up to 101.7 again.

I never ever get a fever that's why I think it's so important for me to be seen - the last time I had a fever was 8 years ago when I had sinusitis and needed to take antibiotics. I am a bit worried that I either have the real flu or something bacterial going on....

I slept with my upper body raised last night, still gastric juices and any water I tried to attempt to drink, kept coming up. I am still able to feed at my regular rate for now, which is good and will certainly keep me from losing weight due to the fever. I try to flush my tube every couple hours with 30 ml of water to get some more free liquids into me, as I am having a really hard time drinking orally.

Sunday, February 27, 2011

I think I've got the "real" flu - high fever (up to 102.2 F so far) that came on suddenly, really, really bad, dry cough that hurts like hell, my bones and joints are very sore too, and no runny nose at all.

God, I am sick...
And I am glad for my tube, keeps me nourished and hydrated...

Saturday, February 26, 2011

Thursday evening my Grandma called, telling me that she and my teenage cousin were planning a day-trip to Vienna to go to a few museums, asking if they could visit me. M already had a trip planned to Tyrol to visit his family, leaving on Friday. Therefore, since I love being spontaneous, I offered them to stay the night at our place and we'd have a girl's night.

They came by yesterday at 3 PM to store their overnight-bags in our apartment and then go downtown with me. That's when I suddenly had a brilliant idea - I checked to see if there were still tickets available for the musical "Dance of vampires" - one of my alltime favourite musicals - I have already seen it twice!
My Grandma loves going to the theater and musicles and so do my cousin and I. We managed to get really good seats, and for me it was the first time that I could use my handicapped ID to get a better price - 50 % off the regular ticket price!!! :-)

We three girls had so much fun, getting ready for the musical, dressing up and putting make-up on and off we went!

Thursday, February 24, 2011

Both my GI doc and my dietician have given me the permission to e-mail them whenever I need to, and my GI doc has even told me that I can text him anytime if something is up with my tube - even on weekends, if he is not at the hospital, he will tell a staff doctor what to do (he is the head of internal medicine). I am a firm believer that professionals who are that committed to their patients should not only be contacted in case of things going wrong or emergencies - no, good news need to be passed on as well.

That's why after going for my first run in six months on Sunday I sent an e-mail including the photo I posted here to my dietician and GI doc thanking them for fighting for me and helping me so much that I now feel good enough to go running again.

My dietician left me a message on my cell phone telling me that she wanted to personally (well over the phone rather than mail) thank me for the mail and the photo I sent. My GI doc mailed back later too thanking for passing on the good news, telling me that I am actually his first PEG/J patient that goes running, and enquiring if he could use the photo for lectures :-).

I love being able to give them good news after so many months of things not going so well.

Wednesday, February 23, 2011

As a psychologists we are supposed to be caring and empathic, but yet still remain distant. A formal hand shake at the beginning and at the end of a session or psych testing - that's it.

Today, I had a 34 year old woman starting to cry just at the beginning of my testing as she had just gone through a stressful situation on her way to the hospital. When someone is having a hard time and starts crying I simply can't be the psychologist who "just" sits there and listens and talks. That's not me!

I move my chair closer to the patients', so that I am not sitting on the opposite side any longer, but closer to her, and I usually put a comforting hand on the shoulder of my patient.

Technically this means I am crossing lines, but for it me it means doing what a psychologist is supposed to do in a situation like this - giving comfort!

Tuesday, February 22, 2011

Today, I chatted with the psychology student who is currently shadowing me, and we talked about my sister in law, who is celebrating her 20iest birthday today and who I was just about to call and wish a happy birthday. I told her that I think that M's sister is a bit too skinny in my opinion.

My student looked at me and asked "even skinnier than you?"

Gulp. I had totally overlooked the fact that that's what people can actually say about me now - that I am a bit on the too skinny side... Since I am not actively trying to be that skinny - on the opposite doing my best and raising my feeding volume and rate continuously to get back to my more feminine self, I have totally forgotten that that's what other people see when they look at me right now :-(.

I know - patience and consistency - if I am patient and consistent when it comes to raising my tube feeding rate, I will gain weight and I will look more feminine again!

Sunday, February 20, 2011

Six months ago I stopped running, knowing very well that as long as I am not able to eat/feed an adequate amount of calories I can't lose calories through exercise. Not that I would have had the energy to go running anyway.

Last summer, I had already decided that I wanted to run the "DM Women's run" this year - DM is the equivalent of "London drugs" here in Austria. Every year they host a 5K and 10K run. I originally wanted to train with my girlfriend Iris, but she decided to bail out on me and get pregnant :-).

Went and checked out their website yesterday - this year's run is on May 22nd. They have free weekly training groups with a certified instructor all over Vienna starting March 2nd, and I have decided to join one. I am so excited!!!!

Today, I went for my very first run in 6 months and even though I walked more than I actually ran and it was freezing outside (just above 0° C), I really enjoyed myself!

Thursday, February 17, 2011

I had some really good news today at work! I am currently (until end of April) interning for my clinical psychology postgrad degree (which I have to get first, before doing my neuropsych degree), but because I am working in a type A department (type A = certified neuropsychologist as my supervisor), I will be able to get this internship credited towards my neuropsych degree as well. Unfortunately I can only do a max. of 6 months at my current workplace (as an offical clinical psych intern) due to legal regulations. In order to complete my internship for my clinical psychology degree I need to work another 3 months full-time in a different hospital. Well, I have already lined up a second internship beginning at the end of August and because this is a type A department as well I can get those three months credited towards my neuropsych degree too.
By the end of the year I would be done with my clinical psych internship but I would still be missing three months for the neuropsych degree (and of course I still need the required classes).
Today my boss told me that he had finally talked to Human Ressources, and I can stay on until the beginning of August as a neuropsych intern. The only downside is that I won't get anything paid, but I am only earning 340 Euros a month there anyway, so it's not going to be that much different.

Wednesday, February 16, 2011

I keep forgetting that I have intestinal dysmotility issues as well, with some reverse peristalsis going on. Or more likely I am still in denial about it. I have been having some intestinal reflux all the time, but yesterday was especially bad, and I was refluxing my formula up into my stomach again. Of course I freaked and thought for sure that my tube was back in my stomach, especially after I just had my little tube drama last Friday and knowing that it was about 15 cm shorter now.

I was on the verge of e-mailing my GI doc to ask for an X-ray for a placement check. And then it sunk in again that this is my new normal. There will be days when my intestines will be pushing my formula back up. And it fits, as I had a GP flare the night before (too much milk foam on my evening tea) with subsequent nausea all through the night and the rest of the day.

In UTI news - I have not heard back from my doc in regards to the urin culture, so either no bacteria could be cultured anymore after two days on antibiotics or the cipro is sensitive to the bacteria that could be found. Today, I took my last pill of a five-day high-dose course, but to be honest I am still not completely symptom-free. I guess I should pay my doc another visit before she is on vacation next week.

Saturday, February 12, 2011

Besides the fact that I had a planned to pay a visit to my family physician for my UTI, the Y connector on my tube broke in the middle of the night.

Imagine my surprise waking up to this:

Yup. That's my j-tube not being connected to the PEG anymore.

M and I taped it, so I wouldn't pull it out even further and we had to wrap it up in plastic bags, as it was leaking everywhere, and I still had to go to work before getting it fixed.

I sent my GI doc an e-mail at 6.24 AM asking if I could swing by for a quick repair, I got a reply by 6.36 :-) - so grateful for this new GI doc and his commitment to my care.

Got it fixed in the early afternoon, and he also shortened the PEG - now my dangly tube is not as long anymore :-).

In the late afternoon M and I went shopping downtown. After just finding out I had to take antibiotics again, I decided I needed to treat myself to something nice. M bought me another waistbag that I can use for tube feeding (I am owning quite the collection already. Since I am tubefeeding all day it's nice to have a choice what waistbag to "wear" :-). And I treated myself to a MAC mascara (very, very black - really suits me).

Friday, February 11, 2011

Two weeks ago from today, I started taking antibiotics for my first UTI ever. I got really sick on the antibiotics and some other meds I had to take. I stopped taking the antibiotics last Wednesday. By Wednesday this week I was symptomatic again, but I thought that maybe I was just being a hypochondriac about it.

I talked with my girlfriend last night and said to her: "You know, I think I have a UTI again, but I am not sure. There is no blood in my urin, but I do have pain when I am peeing." My very sweet girlfriend replied: "Julia, peeing is not supposed to be painful, it's something you shouldn't even be thinking about."

I guess she ist right.
So today I went to see my family physician again and sure enough I have another UTI. She is starting me on Cipro, twice daily 500 mg, which is considered high dose for a UTI, but she wants me to be high dose with my malabsorption issues. She also told me that the Triprem she gave me last time around was high dose too. She also wants to do a urine culture to test for sensitivities on Monday.

Please keep your fingers crossed that the antibiotics work, and that I won't get too sick on them and will still be able to work.

I also had some tube drama last night, but that's a story for tomorrow :-).

Thursday, February 10, 2011

Yesterday, I had a patient right after "lunch". Lunch for me means that I have some clear broth or maybe some very watered down and blended vegetable soup, while at the same time continuing with my j-feeds.

Before I had my j-tubes I was either feeling really run down and not able to concentrate as I was hardly able to eat lunch (or any other meals for that matter) and on the occasions I did have lunch I was feeling so sick afterwards that dealing with patients right after lunch became next to impossible.

What a difference a j-tube makes. I have enough energy to get up every day at 6.20, leave for work at 7.00 and don't return until 4.45. Yes, I am really tired when I come home and usually spend the rest of the evening resting on the couch, but I can do it.

I can deal with patients without feeling sick (at least on most days), and I can focus better on my work. When I was not well nourished I quite often felt that I wasn't able to give my patients the attention they deserved.

I am also starting to be more secure in my tube feeding at work. I have two different waist packs that I use and it works really well. So far only two people have asked about what I carry around in that waist pack and I told them :-). When I started tube-feeding at work and I was walking around the ward, picking up my patients, participating at morning rounds, and team meetings, I always thought that everyone was looking at my waist pack and I was always waiting for people to ask me about it. This is my 5th week as a fulltime working fulltime tube feeder :-), and I am visibly relaxing. I no longer think that everyone will want to know all about the secret of my waist pack. At the team meeting yesterday they talked about one of our dysphagia patients refusing a PEG tube to be put in. I turned to the charge nurse sitting right beside me and quietly said to her that she probably doesn't know that I am a J-feeder, but I am and I am doing quite well with it and if she thinks that there are patients who would benefit of talking with me (me as a psychologist and tube feeder), I am happy to be able to help.

Wednesday, February 9, 2011

I had not seen my dietician since last September, we did all our "appointments" over the phone or via e-mail. This also means that September was the last time that I got weighed.

I knew that I had lost quite a bit of weight with all my GP problems in the past six months, but I wasn't too keen on finding out how much. Last Friday I finally bit the bullet and went to see my dietician.

And I am really glad I did. At first I was a bit surprised when she sat down in front of me and started pulling my skin on my hands and arms. However, she was all excited claiming that she had never seen me like this before - this is the first time that I am at a true weight - meaning that I have lost most of the extra water that I have been carrying around. For two years she has been trying to get me to lose my excess extracellular water, trying me on really high protein diets that were not helping. I have started to lose some water when I was first put on a semi-elemental formula, but at that time I was not feeding fulltime. After a month of j-feeding fulltime my oligopeptid formula I am now finally able to absorb all the protein and therefore lost the excess water. A BIA analysis confirmed my now more optimal body composition.

Of course she weighed me too and yes I have lost quite a bit of weight and am now back to being classified weight. But she said that even though I weigh less, I am actually better nourished now, as my body is finally able to use the protein it gets.

I am bit ticked off that I have to gain weight again, seems like I have been doing nothing but losing and gaining weight for more than half my life (at least now it's for different reasons). Don't get me wrong, I want to gain the weight back, as I don't feel comfortable being that skinny. It's just that gaining weight for me means lots and lots of calories because I am a really hard gainer. It's so unfair that I lose weight so easily, but gaining it back takes months...

I am also a bit sad, as I was at a really good weight last summer, almost a perfect weight to get pregnant at. Now I am far away from a safe weight for pregnancy which means that my plans are being postponed a bit.

In other tube feeding news:
I am up to 100 ml/h during the day time and 80 m/h while I am sleeping. This works out quite well so far. I still need to raise my rate during the day to start gaining weight though. I have been experimenting with different soups, also watered down blended vegetable soups (zucchini, squash, carrots), and that has been going quite well for me. Other than that I don't really eat - just tea with milk and a soup for lunch - that's about it.

I do miss "real foods", but I don't miss feeling sick and nauseated all the time. I was just thinking today how wonderful it is to be able to work and focus on my patients without having to deal with severe nausea.

Saturday, February 5, 2011

What a week!
I finally realized why I was feeling so sick. One of the meds my family physician had given me for my UTI is an absolute no-no for people with GP. Buscopan is an anticholinergic and it delays gastric emptying even in healthy volunteers. I only took it for two days, but it took a while to get it out of my system and I felt sick until Wednesday night. It didn't help that I took lots of Zofran on top of it, as Zofran slows down the intestinal system as well. Thursday I went back to work, still feeling nauseated a bit, by Friday I was back to my usual baseline.

Thursday night I ate some lactose free vanille yoghurt, only a few spoons, but it was so delicious! And I tolerated it quite well. Today I had some really watered down squash soup that my Stepdad made for lunch. It tasted really good, but it caused cramps and some nausea, I might have had too much of it though :-).

M and I selected the first piece of furniture for our new apartment today. It's a really beautiful couch for our living room.

Tuesday, February 1, 2011

Something is way wrong here. I have been non-stop nauseated since Saturday. I realized today that one of the meds I took over the weekend for by UTI might contribute to it - it's Butylscopolamin and it relaxes the stomach muscles and the muscles along the digestive tract. And I think this is the worst thing someone with GP and intestinal dysmotility can take.

I have no symptoms UTI-wise anymore, but my GP is in such a big flare that I don't know what to do. I can't have any of the fluids I usually do, I had to turn down my tube feeding rate due to so much reflux. All I can really do is sleep - that seems to alleviate the symptoms a bit.

About Me

I have chronic digestive problems (gastroparesis, exocrine pancreatic insufficieny, malabsorption, histamine intolerance, fructose malabsorption, lactose intolerance, and multiple pollen associated food allergies).
When I received a nasogastric feeding tube in December 2008 for supplemental night time feedings my fiance and I came up with the stories of "Tube Girl" - my superwoman alter ego who saves the world from starvation in order to put a bit of fun into having an ng-tube.
After six long months of ng tube feeding I received a g-tube at the end of May '09. Check out the posts labeled "The story so far" for more information.
As of July 2010 I have to rely on a semi-elemental formula for malabsorption issues. Fall 2010 - finally had my g-button converted to a gj-button.
Update Dec 2010 - because the gj-buttons wouldn't stay put, I had PEG/J put in with a pigtail for fixation in the jejunum.
Update Jan 2011 - diagnosed with intestinal dysmotility issues. Update Aug 2011 - PEJ placed.